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Planning of Care

For parents, caregivers, health care providers, and teachers, concerns and questions often arise regarding the care and well-being of individuals with Cornelia de Lange syndrome. 

Through advances in treatment, research and understanding of CdLS, our children are often living longer and fuller lives than ever before. 

We understand that adolescence and adulthood are times of major change for the family and somebody with CdLS —what we call “transitioning.” In fact, the family members  have probably already gone through transitions over the years, from early intervention, pre-school, school and then now on to adult life. It is also a time of change for the parents and siblings. Their roles transitions from being their young child’s provider and manager or brother or sister to one of supervisor or counselor to your adult son or daughter.

It is advised to start as soon as you are ready for it with the planning process for transitioning from adolescence into adulthood. It’s for everyone—whether you’re just starting out or you’re well on your way to helping your child develop independence as an adult.


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Please take note that the Ask the Expert service is comprised of volunteer professionals in various areas of focus. Answers are not considered a medical, behavioral, or educational consultation. Ask the Expert is not a substitute for the care and attention your child’s personal physician, psychologist, educational consultant, or social worker can deliver.

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